This treatment totally eliminated cogfog and fatigue. My bladder function is dramatically improved, but not 100%. My spasticity is better. If my legs would work, I would be unstoppable, I don't 'feel' like I have ms anymore---my head feels normal. I can see improvements with physical therapy and expect to do better in the future. I was treated twice, the first time was not very thorough and missed major valvular blockages, so I went for a second round in NYC which cost $10,000 and was worth every penny.
4 days after i have more energy, my throat was sore, i'm warmer, i can feel a strong pulse in my limbs and neck, and my senses are heightened.. my balance, bowel and bladder, dizziness, tinnitus, sinusitis, left-sided numbness, and cognition have all improved some, but wanes back and forth depending on what i'm doing.. my legs still tingle when i'm sitting for too long..
Purpose:CCSVI (Chronic Cerebrospinal Venous Insufficiency)(Started Dec 21, 2010)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Dec 21, 2010
One time
Moderate
None
Always
A little
Date
Dec 21, 2010
Advice & Tips
Unusual for an ALS patient to go through such a procedure, typically reserved for MS. Before liberation treatement, I use to have low level headache almost every day with at least one major headache. Now I will on occassion get a headache. This improved my quality of life, and who knows pealed away one layer of the ALS disease.
Purpose:CCSVI (Chronic Cerebrospinal Venous Insufficiency)(Started Aug 18, 2010)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Aug 18, 2010
One time
Major
Mild
Always
Not at all
Side effects:
Pain in lower back
Date
Aug 18, 2010
Advice & Tips
The unexpected benefit was I don't have a problem with hiccups.
Otherwise, I had immediate energy and my legs are not spastic. My speech is faster and clearer and I taste things more intensely. I can lie with my legs totally straightened and I lift them higher. My equilibrium seems better.
Anyone who suffers from MS should look into this. Venous insufficeincy is not good for anyone. Contrary to what the MS society is saying, you owe it to yourself to find out if CCSVI affects you. When I first heard of this I was thinking, "OH no, another snake oil treatment". However, the more I researched and saw the benefits so many were experiencing, I took it upon myself to attempt getting a diagnosis and possible treatment. The MS society blocked my path every way they could, but through diligence and perseverance, and a lot of help from friends and family, I was finally able to satisfy my curiosity. Turns out I had severe stenosis in my left jugular, and several areas of stenosis in my azygos veins. I was lucky to find an interventional radiologist willing to help. After the procedure I felt good for the first time in years. I mean good.
It is my belief that the MS society's and Pharmaceutical company's have a financially vested interest in keeping us sick and this treatment unavailable. Don't listen to them. Do your own research, find out if this is something you wish to pursue, and start asking for help.
Treated at Stanford by Dr. Dake; now beginning clinical trial early 2010. Left jugular was 95% blocked, right juggler 85% blocked, both at 100% open flow after stents. MS symptoms: Painful morning extensor spasms in calf muscles gone after 3 weeks. Night time leg contracture spasms stopped at 2 months. Now at 3 months, still have some tone/stiffness in legs, but abating. No more icy hands and feet. Urgency has lessened by 50%. Still walking with cane, but energy picking up, balance improving.
Cost
< $25 monthly
17 helpful marks
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CCSVI Chronic Cerebro-Spinal Venous Insufficiency Therapy
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